Posts tagged ‘medicine’

Must Waiting Be Inherent To Medical Care?

“By the time you see the doctor, you’re either dead or you’re better,” my mother-in-law told me. She had to have multiple tests, all with long waits to get the appointments and the results, before her health insurer would allow her to make an appointment with a specialist.

“Waiting is the bane of the medical system,” a former student, an R.N., concurred. Advances in medicine and technology have improved medical outcomes, but have often resulted in more waiting at a time when every other aspect of life is speeding up. Waiting is a systemic problem exacerbated by advances in medicine and by health care reform.

Some of the ways we wait:

  1. Wait to see if the symptoms go away or get worse. We all struggle with these decisions: do we need to be seen about the fever, back pain, or rash? Sometimes we wait because of denial or hopelessness; sometimes because of the cost or availability of medical care. I make decisions about when I need to see the doctor by asking myself if, under the same circumstances, I would take one of my children to the doctor.
  2. Wait to get an appointment scheduled. I’ve made appointments for a sick child by channeling an old friend who could be relentless: “That is not acceptable. I need an appointment today.” Obnoxious but it sometimes worked. The rest of the time, though, the period between making and having an appointment can feel very long.
  3. Wait to get to the appointment. Doctors and hospitals are more abundant in Greater Boston, where I live, than in other places, although traffic and parking can be problematic. Melody Smith Jones described a man’s six hour commute to see a doctor.
  4. Wait to be seen by the doctor. It isn’t called the waiting room for nothing. Dr. Atul Gawande wrote in The Checklist Manifesto about people in the waiting room getting irate when he was running two hours behind on a hectic day. Being irate – or anxious or bored – is unlikely to increase the quality of physician-patient communication.
  5. Wait in the examining room. At least in a waiting room you are dressed. If it is cold and you are wearing a paper or cloth johnny, distractions don’t work as well and examining rooms have fewer than waiting rooms.
  6. See the doctor. Nowadays, as my mother-in-law recounted, you have to wait for the doctor to review your records before even looking at you. I find it surprising that physician rating systems give equal weight to wait times as they do to “communicates” and “listens”, when the latter are so much more important.
  7. Wait in the lab. The selection of magazines is skimpier. You may be reviewing what you were told not to eat or drink: will that cup of black coffee skew the results?
  8. Wait for lab results. If there are any non-routine reasons for testing, this can be interminable. I leave a lab asking when results will be ready and then I call. A former student told me about using Harvard Vanguard’s MyHealth Online. She said, “I love getting the lab results immediately online but I can see how those without clinical training could be overwhelmed or confused by the data and how to interpret them.”
  9. Wait for the doctor’s interpretation of lab results. Lab results can be hard to decipher without clinical training, as my student said above. Even when I know results are available and the doctor has seen them, it can take many phone calls to obtain the doctor’s message via the secretary. Asking the doctor follow-up questions takes even longer. These are waits with a cell phone never turned off so you don’t miss the call.
  10. Loop. You think you’re done but you may need to see a specialist, get a second opinion, or have more tests. As my mother-in-law pointed out, this process can be controlled more by insurance companies than by doctors’ availability. Another type of waiting also takes place now: waiting to get better. A friend bemoaned how she “couldn’t wait” for her black eye resulting from a fall to clear up because she was tired of people staring at her.

Waiting Reduction

We all have to wait. Waiting is an inherent part of being ill. But here are some ways to reduce wait time or lessen the impact:

  1. Schedule tests and doctor’s appointments together. My exercise teacher told me about her husband’s hospital visit that started with a CT scan and ended with a doctor’s appointment to discuss the results. With no problems detected and a year until they next visit, they both said what a relief it was to get it over with quickly. Scheduling appointments together reduced both waiting time and anxiety, although not all tests results can be interpreted this quickly. Personally I find it is much easier to deal with a diagnosis than fear of what a symptom could mean.
  2. Avoid unnecessary appointments through email or phone. A Dutch friend, whose sister and aunt are doctors, recounted instances when she was able to get quick answers by email or phone to questions, be reassured, and save a lot of time and effort. One instance: “Once I was on holiday in Greece and sent my sister a picture when my eye was infected. She told me to buy drops and that it would go away.” Since most people do not have convenient relatives with medical degrees to talk to, being able to easily reach a doctor or nurse by email could provide a way to get a quick answer. Dr. Danny Sands has long been a proponent of physician-patient email, but most practices do not support it. I can easily see the benefits because email forces you to describe a situation concisely and images can be attached as appropriate.
  3. Meet Dr. Skype. Melody Smith Jones posed the question, “Can telehealth be used to end this man’s 6 hour commute by providing him access to the specialists he requires? What barriers and challenges still lay before us to make this a reality?” Dr. Joseph Kvedar answers this, saying “We have to move beyond the antiquated notion that you must visit a physical space and talk real-time with your health care provider to fulfill the process of care.  Seamless communication between you the patient and the system (including your provider but also your health information) will allow us to cut through what is a falsely complex and inefficient system to achieve more efficiency, less waiting and less anxiety.”
  4. Ask the expert. Self-proclaimed experts and community-verified experts provide advice in many sites like Yahoo! Answers. Recently there has been a proliferation of sites supporting health Q&A. A new entry, HealthTap, promotes that it has “Answers from 5,000 U.S. licensed physicians. No waiting room.” I tried it and questioned why I needed to answer so many personal questions during the registration process. Once registered, I started to ask a question but was stumped by how much context to provide. In general one of the things I like about Ask the Expert is the ability to browse other people’s questions – sometimes you learn more from questions you never would have thought to ask – and answers.
  5. Use clinics for non-urgent care. I had a friend who believed that it was important to see the same doctor because he or she could notice changes that might not otherwise be detected. While I agree, the Minute Clinic (note the name) model can potentially reduce some of the use of doctors for non-urgent care.
  6. Enhance health literacy skills. With 80% of US internet users looking online for health information, better health literacy skills are needed to guide the strategies used to seek, select, and use online health information. This is rarely taught in schools or by doctors, and is increasingly necessary because of the lower barriers with social media: it is easier than ever to promote herbal supplements and bad advice.
  7. Make waiting fun – or at least less stressful. Deirdre Walsh, a health coach and a former student, said, “The pain and frustration of endless waiting seems needlessly cruel. But it’s often the emotional toll of fear and uncertainty that does the most damage from the negative effects of stress chemicals on energy, sleep and mood.  If waiting is inevitable, there are self-awareness exercises that restore calm, power, and the sense of control. ” Games and gamification have potential as well: a version of “Wait, wait… don’t tell me!” for the waiting room?
  8. Is there an app for that? Not that I know of, but social media is being used by public health departments to post flu clinic waits and by emergency rooms to post wait times. What about for doctor’s visits? Dr. Richard Besser said, “You shouldn’t have to wait more than 15 minutes unless there’s an emergency.  Social media might be a great place for people to share waiting times.” Along those lines, I read about, but have not tried, WaitChecker, a web-based service to alert patients to appointment delays.
  9. Set expectations. The metaphor Trisha Torrey uses is “when you arrive at a busy restaurant on a Friday night, what’s your question to the host?  How long is the wait?  It’s only fair that providers manage our expectations about wait times, too.” It is easier to be patient with expectations set, not just for the length of a wait but the course of a disease.
  10. Use waiting time on task. A student once told me that she had a rash when pregnant and assumed it was unrelated to her pregnancy. She searched for information on her iPhone while in the waiting room, decided it might be related after all, and asked her doctor, who treated it. She saved another doctor’s appointment. What if all waiting rooms provided mobile devices? Or promoted prevention with education, exercises, and healthy snacks. Talk about captive audiences.

Quality of Health Care Is Paramount

It is important to maintain perspective: quality of health care is paramount. Everyone wants the best care possible and sometimes waiting is unavoidable. With no health advantages to waiting, put , as Dr. Ted Eytan said, “the patients’ cost of care, which includes the time they spend waiting, into the equation. Everything follows from that.” There is no reason to accept that it’s part of our health system, but, instead to work to reduce waiting, and to reduce the impact of waiting.

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October 19, 2011 at 8:22 am 38 comments

Redesign of the Benson-Henry Institute for Mind Body Medicine

While being part of a well-known and reputable organization can have many benefits, not having a visual identity can be a liability on a website intended to help people. This is the case with the Benson-Henry Institute for Mind Body Medicine at Massachusetts General Hospital, whose website provides little information without exploring. Claire Berman, who is working on a Master of Science in Health Communication at Tufts University School of Medicine, was a student in my Online Consumer Health course and, for her project, redesigned the Benson-Henry Institute (BHI) site. Her process included the development of personas, such as Paul, a 35-year-old Newton, MA resident with a stressful job and a family history of heart disease, who is skeptical about complimentary and alternative medicine (CAM). Paul needs to understand immediately how BHI’s website may be able to help him when viewing he views it for the first time, especially because of his skepticism. Claire developed other personas, and showed that the current site design and structure is unlikely to appeal to them or provide them with the information they are seeking. With BHI’s goal to “improve the health status of site users through mind-body relaxation techniques,” Claire’s recommendations for a different look and content are likely to help them achieve their goals. Read Claire’s final paper, with personas who can benefit from BHI’s content and a competitive analysis looking at Gaiam Yoga, Center for Mind Body Medicine, Mind Body Medicine Center, and Mind Body Medicine.

February 19, 2011 at 9:24 am Leave a comment

Safe Fish, Smart Baby: Fish Consumption Advice for Pregnant Women

I gave a talk at the MA Department of Public Health this week and started with a game called Hot or Not. I showed screen shots to get people’s instantaneous reactions, my point being that people leave a site if is not appealing. One of the sites that was considered very “hot” was Lu Xing’s beautifully-designed home page from her final project in Online Consumer Health at Tufts University School of Medicine.

Lu, a graduate student at Emerson College working toward a master’s degree in Health Communication, designed a site, “Safe Fish, Smart Baby: Fish Consumption Advice for Pregnant Women” that was motivated by “the fragmented information that pregnant women have received about the nutritional value and health risks associated with fish consumption resulted in confusion and misperceptions.”Lu’s aim for to “create a credible and professional website that provides clear fish consumption advice, fish coupons, and fish preparation skills for pregnant women, to help them make informed fish consumption decisions, so that they can have a smart and healthy baby.” Her paper describes the steps she took to design her site. Lu and I welcome your feedback on her well-written and insightful final paper.

January 9, 2011 at 1:58 am 2 comments

A Website for the Management of Narcolepsy

Students in Online Consumer Health at Tufts University School of Medicine design health websites for a topic of interest to them or redesign websites for real organizations. Ellen Langhans, a graduate student at Emerson College working toward a master’s degree in Health Communication, chose the management of narcolepsy for her topic. Her goal was “to create a site for people who live with narcolepsy – both patients and their loved ones alike – to help them manage the disorder,” to provide timely information, and to help site members learn from and connect with each other to thrive. Her final paper details the process she went through, which included the development of four personas and a competitive analysis of four websites: two for narcolepsy, Narcolepsy Network and The Stanford Center for Narcolepsy, and two for diabetes management that had similar goals, Diabetes.com and Take Action. Ellen and I welcome your feedback on her excellent and comprehensive paper.

December 28, 2010 at 11:19 pm 1 comment

How and Why Massachusetts General Hospital (MGH) Uses Twitter to Reach Patients

Mike Morrison tweets for Massachusetts General Hospital as @MassGeneralNews and for Massachusetts General Hospital for Children as @MGHfC. I met Mike when I tweeted about the Benson-Henry Institute for Mind-Body Medicine including @MassGeneralNews in my tweet and Mike immediately followed me. I contacted him to find out what his strategy is for Twitter use and what the benefits have been:

Lisa: Let’s start with the name: Locally we say MGH or Mass General and even the website uses all variations of the hospital name. How did you decide what to use for Twitter to be recognizable and searchable to locals and everyone else?

Mike: The name was a tough decision. MGH was definitely an option but outside of Massachusetts it doesn’t resonate. Beyond that it was a matter of pragmatism. Twitter limited the number of characters for our name and we definitely wanted “News” in the title so after that is was pretty much a foregone conclusion.

Lisa: Do you know anything about which MGH employees – or patients – are on Twitter?

Mike: We usually find out about patients, doctors, and staff on Twitter by seeing their tweets. Each time we’re followed by an account I like to take a good look at the profile to see if they are in one of those categories because I want to continue building that sense of community. We also occasionally remind our own staff about our presence through our internal weekly newsletter.

Lisa: Tell me about your background: what did you do before this and how did you learn to use social media?

Mike: After graduating from the University of Maine in 2005, I completed a post-college PR/Marketing internship at North Shore Medical Center in Salem, MA, close to my hometown. After 3 months I was hired at the Museum of Science (MOS) in Boston as a Publicist in the Media Relations department. I worked at the MOS for more than 3.5 years and loved every minute. Though I had originally joined Facebook in college, it was at MOS that I began to see its full potential as a professional communications tool. Along with my colleagues, I worked to launch both a Facebook “fan” page, as they called it before the most recent “like” change, as well a personal page for Cliff, the Museum’s triceratops fossil. I also helped to launch both the YouTube channel and the @MuseumOfScience Twitter page. The jump to social media communication, though conceptual at first, became a reality for us when the media industry began to severely cut staff. Many of those cuts came from Arts and Entertainment writers and reporters who helped us garner much of our publicity. It became quite clear to us that utilizing social media was an important practice.

Lisa: Explain more about why it was important and also how social media for a museum compares to a hospital?

Mike: Social media is important because it allowed us to connect with passionate Museum fans and communicate our news that, while perhaps not ‘big” enough for traditional press to cover, was important to them. We were also able to have a lot of fun. We ran contests for our Facebook fans and Twitter followers. The staff at MOS continue to come up with even better ideas for engaging fans. In terms of a comparison, both hospitals and museums need to listen and interact. At the hospital we have to ensure that we apply our high standards of patient privacy to our social media practice. Though I didn’t realize it before I arrived, MGH’s world-class research programs ensure that science is very much part of what we do. Some of the most covered MGH stories come from our ground breaking research.

Lisa: How long have you been at MGH, what are your roles, and how did you get this position?

Mike: I arrived in October of 2009. I received an email from a friend letting me know they had noticed the MGH position and thought I should take a look. At its most basic level, my job entails the traditional proactive and reactive media relations (pitching stories/pairing our experts with media). I also oversee social media for the Public Affairs department and do general writing assignments like web stories or annual report stories. Two examples are http://www.massgeneral.org/about/newsarticle.aspx?id=2462 and http://www.massgeneral.org/about/newsarticle.aspx?id=2377.

Lisa: What do you do specifically in this role?

Mike: While at MOS, I would say 80% of my job was proactive and 20% reactive, whereas as now that number is reversed. We respond to hundreds of media calls each year and also operate a live television studio to accommodate national and international broadcast requests. We in Public Affairs work on a beat system with staffers covering different areas of the hospital. Mine include Global Health, Neurology, Neurosurgery, Imaging, and Orthopedics. The other part of what I do – and a major reason why I was hired – was to help launch and integrate social media communications. Luckily my superiors saw the importance of social media before I got here and when the opportunity came to fill a position they made social media a priority. So to that end, I launched @MassGeneralNews on Twitter last February and hope to hit 1,000 followers by the end of this year. I also launched our YouTube channel (www.YouTube.com/massgeneralhospital).

Lisa: Does MGH have a Facebook presence as well?

Mike: Yes, our colleagues in the development office do a great job: http://www.facebook.com/#!/massgeneral , we have a really nice collaboration. Recently, some colleagues and I did launch a profile page in order to communicate bicentennial (we turn 200 in 2011) and history info from the hospital. The profile belongs to Padihershef, a literal mummy who resides in the Ether Dome: http://www.facebook.com/#!/MGHPadi

Lisa: How much time do you spend on the average day?

Mike: Assuming my day isn’t a crazy media day with a major event, I generally work 8:30-5:00 with 60-70% of that time being spent on media calls and the vast majority of the remaining time spent on social media (practice, monitoring, and self-education).

Lisa: What happens with Twitter when you are off duty – do you ever check nights or weekends? Mike: When it comes to Twitter I’m never off duty. While it’s not required for me to check on weekends, I absolutely do. While that probably comes more from a personal desire to grow the presence and not an expressed mandate, I also know the conversation never stops and I like to keep up on it. Occasionally I “unplug.”

Lisa: What oversight is there?

Mike: I’m fortunate to work with superiors and colleagues who “get it.” Though our social media presence is monitored by the leaders of our department, we have a decent amount of leeway.

Lisa: Do you get physicians and other staff at MGH involved, for instance feeding information to you to tweet?

Mike: Often we are approached by different groups in the hospital about the use of social media to promote their efforts. We do in fact work with doctors and administrators from various departments to add their content to our platforms whenever possible and ask that they send us current interesting content.  For example we were approached by an extremely talented group of researchers from our Emergency Department who created a great free app for the iPhone, which lets users find the closest emergency room to their location anywhere in the United States. Our strategy here was to create this YouTube video and then pitch to bloggers encouraging them to use our embed code for their stories. We got great a great response on this as it was posted to Boston.com and Wired.com’s Geek Dad Blog. Although it’s tough to get publicity among a sea of apps, our video allowed us to provide more content for bloggers and increased our chances of getting attention. Even if we didn’t have the pitching success we did, we were able to tweet the video and the link to download, as well as post to our Facebook page. It was a great combination of traditional pitching, content creation, and social media.

Lisa: Does MGH have a social media policy?

Mike: MGH does have a social media policy which helps to provide clarity for our employees and audiences for social media interaction with MGH, or on behalf of MGH.

Lisa: What is the ROI – is MGH doing this because everyone else is or because they see this as essential to their mission, and how do you know you’ve been successful:

Mike: For us, it was easier to think of social media as an important tool we can use to accomplish the goals we already have. We are more of a news/PR office and not marketing so I’m more concerned with communicating and sharing stories or useful information and less about bottom line. Although that’s probably a little shortsighted of me, it’s easier to get started when you already have the goals and the content, and think of social media as a vehicle for both. While I think ROI is important, I’m a true believer that if your reputation is solid you’re going to get the business anyway. To MGH, social media is essential to our mission. Our mission (although I’m not quoting) is to help people. If we know people are looking for help through social media channels, we should be there. For me, it’s like us not having a website or telephone: how can we help if we’re not using the same technology as our patients?

Lisa: How much monitoring do you do of MGH’s online presence and how (obviously you saw my tweet!)?

Mike: I monitor Twitter constantly. I have searches set up via tweetdeck for our Twitter handle, hospital name, and several of its variations. While I don’t log any of the info in any kind of official report, I do respond to and inform folks we work with about any tweets or communications that could indicate a wide-spread issue that warrants a response. Also, if time allows, I do some simple Google searches (blogs, news, etc.) just to see what’s out there.

Lisa: What are specific strategies you use to follow, get followed, tweet, and get retweeted?

Mike: First off, the tweet is king. I try to always offer interesting content, or at least content that is a bit more humanizing and takes away the mystique of a huge faceless organization. Beyond that I try to slowly follow people who are tweeting about us or healthcare in general. I find using hash tags to file my tweets by medical topic often results in followers because people searching that tag are usually the most passionate. Also doing simple things like adding social media icons to my email (as long as outlook is behaving) and putting information about our Twitter handle in the weekly employee newsletter helps. Most importantly, I build followers by engaging. For me it would be easy to view Twitter as a one-way source, but MGH needs to be retweeting and asking questions to develop a truly valuable follower base.  Also, our breaking scientific research news is probably our most retweeted.

Lisa: Do you compare what you are doing to other hospitals or any other organizations?

Mike: I definitely like to see what other hospitals are doing with social media. Any great organization keeps up on industry trends and I think lots of hospitals across Boston and the country are being really creative. It’s also a great benefit to attend conferences with folks at other hospitals because we trade ideas and tips. I think that’s what I like most about social media: the community spirit.

Lisa: For someone starting out in a similar role or wanting to improve a hospital’s online presence, what are your 5 pieces of advice?

Mike:

  1. Content. If you don’t have good content, you have nothing. Obviously this isn’t my idea but I believe it’s the gold standard of online communications. Not offering good content would be like opening a YouTube page to host your TV commercials…snooze……
  2. Commit. Never use social media “cause everyone else is doing it.” Once you have an idea of your content, make sure you commit the time or allow your employees to commit to learning and practicing it. Even if it only takes a minute to tweet something, you need to be looking at Twitter constantly. At any other job, searching YouTube channels may be grounds for a conversation with your manager, for me it’s a matter of researching best practices and keeping up on trends.
  3. Culture. In order to become involved in social media, you have to understand the culture. If you ever friended your parents on Facebook, you get my point. When starting out, just listen. This is especially true with Twitter. For example, someone who doesn’t understand the Twitter culture might find it odd for MGH to retweet a “competing” hospital who just won an award for a service we offer. But the Twitter audience is completely comfortable with this. At the end of the day it’s about standing on your own work, your own reputation.
  4. Put yourself in your audience’s shoes. For us, it’s patients. When I think about good content, I try to think about a person who has just learned that they or a family member has been diagnosed with an illness. What they want is to get the critical information quickly. What they don’t want are slick commercials, pop up ads, or a link to a phone number with no information.
  5. Be human. How many times do we hear about robo customer service? Or how some large organization seems like a monolith that doesn’t listen? Social media puts the power back in the consumer’s hands and it’s important to engage in two-way conversation. When people feel connected to your organization they’ll work with you. Even if they have a negative experience, they’ll return as long as they’ve been heard.

December 3, 2010 at 10:08 pm 7 comments

Writing Enticing Yet Accurate Health Content: Lessons from Journalism

Gary Schwitzer is Publisher of HealthNewsReview.org, where he and his team grade daily health news coverage. He works to improve health journalism with the goal of improving consumer knowledge and decision-making. He was the founding editor-in-chief of the MayoClinic.com site. While his guest lecture at Web Strategies for Health Communication was on health news reporting, I realized that his review criteria seemed equally applicable to any health content and asked him if he agreed:

LG: You critique health news stories and provide guidelines for health journalists; do your guidelines apply to all health writing using the web and social media?

GS:  I think our ten criteria could be applied to any form of health communication, perhaps including one’s interaction with one’s own caregiver.  They may be even more helpful or relevant for health writing on the web or in social media, where standards may sometimes dip a bit.

LG: Do you have recommendations about how to create titles that accurately reflect content yet are enticing? Looking at recent titles of articles you rated, some are descriptive but some are more sensationalistic, almost what you would expect to see on the cover of Cosmo.

GS:  We often see solid reporting that is undercut by a sensational headline.  Good journalism, good writing, good communication doesn’t need the sensational title or headline to “sell” it.  In TV news, for example, it’s not only the headline that matters but the “tease,” the promotion, the visuals, the introduction.  Someone with a publishing concern must take responsibility for the total package of what is communicated.

LG: What about how to write accurate yet enticing, snippets of articles? This is important when the entire text doesn’t appear on a home page and is increasingly important in social media when the number of characters may be limited.

GS: It is possible to convey accurately with balance and with relative completeness even in TV news or in a web “abstract” or in social media.  Of course, with the latter, the use of links to flesh out the “completeness” is not only possible but desirable.  I learned how to do a pretty good job even within the constraints of TV news during my career and am now trying to learn to do so even with the 140-character constraints of Twitter.

LG: What advice do you have for health communicators who are creating web or social media content?

GS:  Content is still king.  Substance over flash.  Steak over sizzle.  There is a tremendous responsibility to get things right on these vital health and health care topics.  Increasingly, I see the value and importance of being correct – perhaps at the expense of not being first.  We need to understand that there is true harm that can be done with inaccurate, imbalanced, incomplete communication on health care topics. Our first and greatest responsibility is to our readers – not to the perceived style demands of our medium or format within which we work.

November 23, 2010 at 11:46 am Leave a comment

A Consumer Representative to the FDA on Advocacy

Diane Aronson is a Special Government Employee, serving as Consumer and Patient Representatives for the Food and Drug Administration (FDA). Working through its Center for Drug Evaluation and Research (CDER), Diane has served on many of its Advisory Committees and has been a standing member of the Arthritis Advisory Committee. She is Past Executive Director of RESOLVE, the National Infertility Association, Past-President of the International Federation of Infertility Patient Associations and the Road Back Foundation, an on-line service that provides education, medical articles and peer-support about the use of antibiotics for the treatment of rheumatic diseases.  Diane has also served as a Consumer Representative for the Centers for Disease Control and Information (CDC) and the National Institutes of Health (NIH).

LG: How did you become a health consumer advocate?

DA: I noticed at a young age that I can be compelled to speak up for others when needed and that this ability can lead to making a difference.  My style is to listen carefully and provide support and information, especially where issues of safety or risk are concerned.  The path to my health consumer advocacy work started as a result of my own medical issues with arthritis, cancer, and infertility. My rheumatoid arthritis wasn’t diagnosed for years after symptoms started in my late teens.  The pain and fatigue were discounted by my physician who told me that I looked fine despite some irregular lab results and took no further action to explore what caused the symptoms.  What activated me included the consequences of this approach and a desire to help others who struggle to find successful medical treatment. This perspective encouraged me to volunteer to share my experiences and later, led to paid consumer advocacy work and to my current position with the FDA.  Despite past complex and challenging health issues, I am grateful to be healthy and very active.

LG: How did you start working at the FDA?

DA: I learned that the FDA was seeking a Consumer Representative for their Arthritis Advisory Committee and so I applied.  They are often looking for individuals who can provide a consumer perspective to their advisory deliberations as well as an interest in and ability to assess medical data. The application process is about six months long as it includes a review for any potential conflicts of interest.

LG: Tell me about what you do at the FDA.

DA: I am asked to serve on Advisory Committees to review drugs that may need an additional review of outside experts.  Committee Panels most often include physicians, researchers, statisticians, patients, consumers and non-voting industry representatives.  For each meeting, panel members are sent information from the company-sponsor as well as the FDA about the drug to be reviewed.  A list of questions is also sent to panel members who are encouraged at the meetings to ask questions and, at the end, to vote on and provide opinion about the drug under review.  For me, the position requires the combination of the advocate in me, an interest in science and biology, my past medical experiences, the desire to represent a broad constituency of health care consumers and a general interest to review details and solve problems. It is very gratifying through my research and study before meetings, and especially as a layperson, to be able to contribute a perspective that may not be considered but may be helpful to the discussion. At one panel meeting and due to my research preparation, I found myself advocating for members of the military who might be prescribed a potent drug that was being reviewed.  I found that one of the active ingredients was counter indicated with SSIs. Since many in the military are reported to be treated for depression with SSIs, I advocated for a consideration of this interaction on the label should the drug be approved by the FDA.  I am hopeful that this kind of a consumer perspective can make a contribution to the deliberations when I raise concerns such as this.

LG: Can you tell me another instance?

DA: I served on committee for a cancer drug which had a regimen of 3 years and included some serious side effects.  There was an alternative existing drug with similar side effects, effectiveness and result but with a short-term treatment.  I raised a concern that the long-term treatment would be arduous on patients with only a very slight percentage of improvement in the death rate.  Although we are asked at panel meetings to review safety and efficacy, I believe that quality of life issues are also an important perspective.

LG: What role does empathy play in your advocacy work?

DA: I leverage my own experiences and understanding of being challenged by a health concern, my broader experience in representing consumers and my desire to improve the quality of people’s lives when they are suffering physically and emotionally from health concerns. In the case of the cancer drug, it was clear to me that no one should suffer longer than necessary from side effects and with little improvement in the primary outcome of death survival.

LG: What achievements are you proudest of?

DA: I have served as a mentor for new Consumer and Patient Representatives and enjoy passing on tips to help with the initial orientation process.   I am extremely grateful to have had the past work advocacy opportunities to author countless editorials, articles, book chapters, etc. and to give many speeches nationally and internationally at consumer and medical associations, run conferences and workshops and work on legislation about consumer health care issues.

LG: What direction do you see the FDA moving in?

DA: I am truly in awe at the number of issues that the FDA considers regarding drugs that have already been approved and by ones that are in the pipeline as well as the huge number of medical devices for which they have oversight.  Since the passage of legislation (FDAAA), the FDA has been working on enhancing transparency and involving more consumers and patients in their various activities. The social media is now very important as an educational resource.  Recently, it has reported on a number of drugs that had been approved by the FDA but now have serious side effects reported which weren’t able to be considered at the time of approval.  Examples are a recent one for diabetes and drugs used for osteoporosis.  FDA leaders want consumers to more readily report side effects to them via the MedWatch area of its Web site set up for safety information and adverse event reporting.   In addition, they hold frequent meetings and Webinars on a variety of topics for patients and consumers and a number of these presentations are available through http://www.fda.gov.

LG: How do your advocacy skills work with family and friends?

DA: Most of my family and friends probably don’t realize the level of involvement I have had as a lay health consumer advocate but some do turn to me and ask for a perspective that they can add to their research and deliberations with their physician.  I might suggest resources and strategies but above all provide a listening ear to their concerns and overall experience. I speak up about health care perspectives but realize that in the end everyone has to make their own choice about their personal health care decisions.

LG: What are your recommendations to people who have health conditions?

DA: Read everything; talk to others.  Do the research.  Seek out credible internet Websites and verify information with published medical articles. Consider joining a support group.  Make informed decisions using evidence-based information not just an anecdotal experience about which you have heard.  Seek medical professionals who will work in partnership with you and respect your decisions about treatment.

LG: Should everyone who experiences health problems become “activated” and help others in some way?

DA: Advocacy is a passion.  You have to have a strong desire to take the time required to make someone’s experience easier and more hopeful.  And, you need to come from a position of knowledge so your research and perspective are critical.  In addition, you might feel activated towards advocacy at various points in your life and not at others, depending on your current experience.  The hope is that education, peer-support and advocacy on behalf of others can contribute to enhancing the health care system to benefit a broad group of individuals impacted by debilitating diseases.

October 26, 2010 at 11:48 pm 2 comments

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Lisa Gualtieri, PhD, ScM

Lisa GualtieriLisa Gualtieri is Assistant Professor at Tufts University School of Medicine in the Department of Public Health and Community Medicine. She is Director of the Certificate Program in Digital Health Communication. Lisa teaches Designing Health Campaigns using Social Media, Social Media and Health, Mobile Health Design, and Digital Strategies for Health Communication. Contact Lisa: lisa.gualtieri@tufts.edu

@lisagualtieri


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